29 October 2015

Last month I took a Facebook break. I felt overwhelmed - with online and offline life. I just wanted to escape for a while. I felt suffocated, watched, pounced upon at times, argumentative, lost for and full of words simultaneously, and tired. So tired.

(I want to write about activism burnout in depth soon, but I'm still tired.)

I couldn't pretend that everything is ok when it wasn't.

As an online writer, I put myself out there, addressing (what I and others consider to be important) issues and giving a lot of myself.

These recent months have been really tough and I needed time out, away from the noise, criticism and seemingly never ending issues. It's sometimes thankless and met with a lot of misunderstanding about me. I know I don't have to 'take on' every cause, but when issues around discrimination and exploitation of appearance affect people in my community, they affect me.

It seems relentless - ableist language, lack of solidarity from a support group, misuse of our photos for exploitation, the demonisation of those who dare to speak up, photos of naked children in Facebook groups because people are desperate for medical answers, the misunderstanding of activism from friends, awful behaviour from other bloggers, the high expectations to be on/polite/educating/putting up with at all times, scams to tug at heartstrings and to open wallets...

It's not all bad though. I love what I do. I just can't do it all.

It's funny how words and pictures we scroll our thumbs over can weigh us down. They only exist virtually, but crawl into our hearts and minds, chipping away at our emotions. Tragedy, issues, events and opinions can be burdensome.

During the week off Facebook, I reconnected with life. I read books. Wrote. Watched TV. Caught up on chores. I also was blissfully unaware of all online outrage. When I logged back on, I saw one of the most shared stories was an inspiration porn one, about a disabled man in McDonalds. I was so glad I missed that!

I'm proud of my online writing. I try to work hard at it, research well and talk to lots of people so I can learn and grow. During that week off, lots of friends emailed or texted asked where am I?, concerned and hoping they'd see my musings again soon. It was really nice to know that I (and my writing) was missed - I surely missed my Facebook friends. But the thing that made me smile the most was when a friend texted me asking me to send her a daily photo of what I'm wearing, because she missed my outfits the most.

That week I'd unplugged was so refreshing. My world didn't end. I still kept up with the news, via news websites and Twitter, selecting what I read on my own terms. I didn't get sucked into circular comment wars. When I reconnected, I wrote many words for long form pieces that I'm proud of, and have been even more considered about how I engage on Facebook. I'm not clicking on every link to outrage. If I see an issue that I could weigh in on, I consider the impact it will have on me and the impact I could have on it, and walk away if needed. And those decisions mean I feel lighter.

(This post is for a little group project about plugging in and being unplugged, inspired by Erin from Design for Mankind, and led by Pip Lincolne. Read others' pieces and join in via Pip's blog.)

26 October 2015

The thing about looking different is that people tell you what they really think. Not all of what they say is malicious - it's a case of unthinking behaviour, personal discomfort/projection about someone else looking different or no filter between brain and mouth.

These are three conversations I've had recently.

Lady at bus stop, pulling disgusted face: "Ughhh have you been burnt."

Me: "No. I haven't been, I was born like this. There's no need to pull that face at me."

Lady: "I'm sorry. But you're very attractive though. Very attractive even though you look like you've been burnt."

A couple of months later:

Man on tram, laughing: "you've been covered in blood!"

Me: "No, born like this. Not a Halloween costume."

Man: "sorry, I bet everyone thinks it is."

(I do believe this idea might stem from scary face at Halloween.)

And then, in the same week:

Lady in African restaurant, waving her arms around her face: "what's the significance of this, your face?"

Me: "what do you mean?"

Her: "is it traditional African?"

Me: "it's traditional genetics."

Her: "I've seen pictures of people in Africa who wear makeup like that."

Me, laughing: "I'm sure you have. That's one of the strangest questions I've been asked. And it's rude to just come up and ask a stranger about their appearance."

Her: "Sorry. I don't think it's rude. I was kind of hoping it was traditional makeup. I love it."

Adam: head in hands, bewildered.

(I have South African heritage. Never worn traditional dress.

I was dumbfounded. Like I'd black up to go to an African restaurant (even though I'm part South African, I don't appear that way, nor accentuate racial features). So strange.)

I'm not even making this shit up! These microaaggressions happen to me a lot. I acknowledge they're not discriminatory or upsetting (for me). Others might take these encounters to heart. But they're tiring. And fortunately, laughable (and blog fodder).

I just don't understand how people think it's polite behavior to say stuff like this. And then the conversation gets really awkward because they've interrupted me to discuss my face and how they feel about it. And if I call them out on their rude behaviour, they might perceive all people who look different or with a disability as unapproachable. So ultimately I (perceivably) end up being the rude person because of assertion.

Outsiders (and even insiders - those with my condition) see these encounters as an opportunity educate the ignorant. And while I agree with educating, I maintain that we don't have to be *on* all the time. But then it's assumed that because a number of people welcome that, we ALL do. That we are all ok with questions and comments and education 24/7 if it helps the greater good.

I also believe that people who make such comments - particularly about an appearance being akin to a Halloween costume or feeling sad for someone for looking "unfortunate" might be projecting their own insecurities of what it might be like to look different.

I'm not sure of the response that people expect me to give to make them feel comfortable. It seems that being honest about born like this isn't enough to evoke empathy. It seems that me calling out their rudeness isn't enough for them to realise they are, in fact, being rude.

Are boundaries blurred because of curiosity - and when people are curious, they're not rude, right? Does social media make people feel they have the right to offer an opinion on everything, even in person? Or is it just a case of not engaging the brain before the mouth?

I've discussed the issues of intrusive behaviour and unsolicited comments and questions so much on this blog - and I still have no answers (and still get people telling me I should expect this, and that it's my job to educate all the time). Sometimes I find myself in the most bizarre conversations - defending my appearance and setting someone straight about whats polite behaviour. All I can do is laugh.

23 October 2015

With just under five months to go until the Big Day, wedding planning is in full swing. It certainly helps that I was an event planner for so many years in my day job. I had hoped the wedding stuff would be organised by December, but I think the end of January is more likely. This year has gone so fast! I've been super secretive about the details - there are so many things I want to show you NOW but I will wait until The Big Reveal in March.

I tried on my wedding dress again this month - the first time since I bought it. Really pleased it still fits, considering my love for cake, cheese and wine. Phew! It's perfect.

A talented dressmaker friend came to my house to take my measurements for a bolero she's making me. While I'd love to go sleeveless for the day, it's just not practical. And so lace adds a different texture, with some peeks of skin. Of course I've also bought a warmer little coat because I know I'll be cold! I scored that at a bridal shop that was closing down - 75% off!

And last Thursday night I was a guest of Etsy and Bride's Wedding Trunk Show. I took Cassie, Adam's sister and my bridesmaid. It was so much fun. I'm so lucky to have an amazing woman as my sister in law to be - I love her. We were given gorgeous flower crowns made by Mint and Melon - I wore mine to work the next day!

The trunk show featured 20 Australian and NZ sellers, showcasing their beautiful (and affordable) wedding accessories and stationery.

I am confident that I found my headpiece - again I want to show you everything I'm wearing but you'll have to wait! Here's me wearing a different headpiece - this one (and the other flower accessories) is by La Plume De Fleur.

I'm not having a veil (because it will most likely stick to my face!) but it was SO FUN trying on a veil at the trunk show. Cassis suggested I try one on, and of course I loved the candy pink veil. It was so long - lots of tulle! It sadly won't suit my wedding dress, but it worked really well with my corporate wear, don't you think?! This veil is made by Laced Up With String. Pretty!

On the weekend, I browsed Etsy and found a perfect accessory - a pocket mirror in my exact wedding colours! I've emailed the seller to ask her if she can make some extra accessories for my bridesmaids. Isn't this the prettiest!! The maker is Clay and Chic - she's in Russia.

I love the idea of handmade, but I don't fancy myself as a hand-maker, so Etsy is perfect for me!

Some lovely Facebook followers gave me great advice on wedding lingerie. And on the weekend I took their advice and bought some (Simone Perele)! Corsetry out and comfort in! And it was on sale! Hurrah! The sales assistant at David Jones was so lovely - showed no disinterest or surprise that I was getting married. A great experience.

It's getting so exciting! I've been able to spend the money we've squirrelled away on little purchases to make the big day special. And everyone has been so lovely with their advice and support.

(This post isn't sponsored but I did receive free admission into the Etsy + Bride trunk show - and much sparkling wine and cheese was consumed!)

Are you planning a wedding? Are you having handmade? What do you recommend?

21 October 2015

When I got the email from Business Chicks to tell me Turia Pitt was talking at an event, I put off booking a ticket. I wasn't sure if I could afford it, and I'd just started a new job. But she's someone I admire so much, and have been following for two years or so. She's one of my appearance activism heroes. And so I checked with my manager if I could come in half an hour late, reshuffled my funds, and booked it. It's been one of the best investments I've made this year. I am so glad I went to the breakfast event. (I'm a big believer about investing in your own development, and Business Chicks events are a great way to do this!)

The first time she wiped her own arse after her accident, she felt like she'd won the Olympics, she told us. She's funny. And she sees the funny side. Turia showed us photos of her wearing the compression mask. She laughed, and we laughed, as she showed us her driver's license and passport - her face covered by the mask. She said she could be the world's friendliest terrorist.

3. She is a burns survivor, not a victim.

A woman in the audience asked Turia advice for her young daughter - describing her as a 'burns victim'. Turia answered, saying she is a burns survivor. The audience applauded.

4. Turia wants people to own their appearance diversity.

Her advice to a child who's a burns survivor: "Own it. If you're self conscious, others will notice. Fuck it."

She said that she's embraced her physicality and appearance, and is not letting it stop her enjoying life.

5. She doesn't set out to be an appearance activist.

Turia said she doesn't feel she's a celebrity, and doesn't actively promote positive body image. But it's merely by being, by speaking and showing confidence in herself that she is.

When I interviewed her last year, I asked her whether she hopes that her AWW cover changes the way the media showcases appearance diversity? While she said she was forever grateful to be on the cover of a high circulating magazine, she also told me "Honestly, I haven’t really thought about it." I was surprised at this response then, but when I saw her speak, I realised she's not setting out to be a role model or an example or a change maker, she just is.

A friend recently reminded me to stop and realise there's more to me than my appearance activism crusade, and remember to have balance, and Turia's talk reinforced that for me. Sometimes we can have the most impact by just living our lives.

6. Gratitude is so important.

Turia credits her mother and partner for being with her every step of her journey since the accident. She acknowledged how hard it is for them to see her in pain ("it's traumatic for the people we love to see us go through pain."). She thanked many strangers who did their jobs, risked their lives and gave up their time to save her. She said she feels she has a duty to live life to the fullest to thank and honour everyone who's helped her. She credits her success to everyone who has helped her.

7. There will be bad days, and that's ok.

While she's the fittest she's ever been, and happily engaged, she has bad days.

"I accept life isn't always going to be great. It's ok to own a shit day. Tomorrow's probably gonna be better."

8. She challenges people to grow by getting outside of their comfort zone. (Because that's how she grows.)

"We don't grow & hold onto an outdated version of ourselves 'cause we don't want to evolve or try something new", she says. "It's crazy the excuses people use to keep themselves stuck."

9. She has proven naysayers wrong.

From her highschool teacher who said she wasn't smart enough to do the subjects she chose to a doctor who challenged her during rehab, Turia is using peoples' negativity to drive her success. She says "screw you mate" to those who said she can't.

10. She's living the dream life.

Speaking, doing charity work for Interplast, training for an iron man event, surrounded by amazing people. And she's engaged! She's seen amazing kindness in times of tragedy.

"It's so beautiful. The best in humanity can just show up in the worst moments." She's finished working an engineer, though she's glad to be able to throw that qualification into conversation! Now she loves her new career.

11. Pain is tortuous, and inevitable.

Anticipating the pain has been one of the worst things since her accident.

"Anticipating pain has gotta be the most torturous experience I've ever had", Turia said. She spoke of the fear of bandage changes: lying in a burns ward hearing others having their bandages changed, screaming, made Turia fear her turn. (I could relate to this - anticipating the pain of sore skin is a difficult thing).

12. While she doesn't let the fire define her, she believes her wounds have made her so strong.

"Your wound, your weakness is your biggest strength", Turia said. She said everyone has wounds - they're not just physical - and everyone wears a mask. She doesn't have to wear a mask around her fiancé.

13. Successful people have a team behind them.

Turia has a team behind her. They cheer her on, give her praise and encourage her to be the best she can be. "When you surround yourself with like minded and successful people, anything is possible", she said.

I've seen a few high profile speakers now. Turia Pitt has been my favourite. She is so honest and so lovely. When we met, she gave me a big hug and told the Business Chicks staff that we've been online friends for a year now. It made my day. Thanks Turia!

19 October 2015

One of the most difficult things about having a rare medical condition is that I feel like a lesson for doctors. I've written previously about how I was involved in medical conferences as a child, and regularly take part in medical exams for dermatology registrars during my hospital appointments as an adult. I've moved from the role of patient to teacher now - educating dermatologists on their training days. I'm constantly explaining what Ichthyosis is, and what the condition means for me.

When I visit a new GP (when my regular one is away, for example), they are often unaware of Ichthyosis. Sometimes they can do no more for me than provide a medical certificate and a prescription for treatment that I've recommended. Or they are so fascinated with my condition they haven't been able to focus on the illness I'm there for.

It's often not practical for me to go to my specialist - which is hospital based, and only available in a clinic a few days a week. Of course, there's the option to go to emergency, but I don't fancy sitting there waiting for five hours.

It's important for me to have a good relationship with a GP, and for them to be knowledgeable about Ichthyosis, as well as putting that aside to give me advice about an unrelated medical condition.

It's pleasing to know the Royal Australian College of General Practitioners (RACGP) is committed to training GPs in specialised medicine. The RACGP ensures industry standards are set, and GPs are supported through continuous training to improve their medical care and knowledge.

The RACGP website lists over 1700 specialised training courses available to GPs - delivered face to face, online, blended learning environments and events around the country

A quick search for dermatology showed me there is a primary care dermatology course available - which is really reassuring for me, and other parents and patients affected by Ichthyosis.

A good GP was crucial for managing my condition when I was a child. I grew up outside of a rural city - bang in the middle of Sydney and Melbourne (each a five-hour drive away). There were no suitable dermatologists in the rural city, and while I went to the wonderful paediatric group, I couldn't see them all the time. And so my parents took me to the GP. I went there when I had colds and sore throats, but also for sore skin. My mum says:

"Although Carly was a very sick baby, we did not visit the GP often. She was in the care of a paediatrician until she was about 18. Most of her illness required specialist…i.e. ENT, Eye Specialists etc. We had a family GP who was great and we made a point to educate him about the Ichthyosis. When she did have to visit the GP it was either for fever/colds and flu. So our experience with the GP was not a difficult one at all."

When I was really little, I was playing in the park and fell on a tap - resulting in a big split of the skin above my eye. Mum panicked, not knowing what this would mean for my Ichthyosis, and she rushed me to the GP. They immediately knew what to do, fixing my face with butterfly strips.

I visited that GP clinic for years - and my parents still visit the clinic. Sadly, the main GP I saw - who still practiced until recently - passed away a few months ago. We all thought so highly of him, it's a big loss to the community.

Having a good local GP saved my parents from asking the paediatric group questions about illnesses unrelated to my skin. The doctors were mindful of my condition while providing the right treatment on each occasion.

I was chatting to some mums of kids with Ichthyosis, and it seems not much has changed. A good GP is still important for treating patients with rare medical conditions. Their comments emphatically said knowledgeable GPs are so important in remote communities.

Cheryle lives in rural Tasmania and has a two-year-old with Ichthyosis. The Royal Children's Hospital - where the specialist (and affordable) dermatology clinic is a plane or boat trip away - and a trip to the hospital can be very expensive when transport, hotels and food are factored in.

Cheryle told me how her local GP has gone out of his way to educate himself about Ichthyosis - including pharmaceutical treatment and interstate treatment options that might benefit her daughter.

"As a carer for a person with Ichthyosis who is too young to have her own voice, having the right fit GP has been invaluable both in terms of medical care and support. I've found my GP has become my medical Advocate for my daughter in a sense", Cheryle says.

"Our current GP has not always treated our family and it took some time to find one who is the right fit. We've gone from a once every 6 months to every second week and he insists if we feel like coming out to touch base with him otherwise he rings every two weeks. This offers me support and a chat with someone who understands."

"His advocacy and support is all I have in a small town where treatment and hospitals are a significant travel and a problem to a little girl who overheats."

Cheryle told me how difficult it was when the regular GP was not there and she saw a difficult GP - one who wasn't aware of Ichthyosis. Her daughter had a common cold, yet the GP lectured Cheryle about the child's redness and suggested Cheryl do more to relieve it.

Cheryle hopes that for GPs in rural areas, there is more incentive for them to train in specialised medicine. For a patient in Tasmania, the travel time, infrequency of transport and cost is prohibitive to seeing a specialist in a main city.

Melissa, whose nine-year-old daughter has Netherton's Syndrome (the same type of Ichthyosis as I have) told me about another GP success story.

"My daughter has been very lucky with doctors. Her Paediatrician had told me that there was a chance that she had Netherton's Syndrome the day she was born. He has always been a wealth of knowledge and if he needed extra information he reached out to her dermatologist. My daughter's GP is amazing and works hand in hand with her paediatrician. I will not go to another doctor unless absolutely necessary as I think another doctor will not really understand 9 years of treatments in a 10-minute consultation."

Knowing 90% of Australian GPs are members of RACPG makes me more confident in visiting the GP. The RACGP are responsible for their members professional development, setting industry standards and supporting GP’s by continually evolving and bettering their modern medical care and knowledge. GPs are specialists in whole medicine - knowledgable in 22,000 different illnesses as well as each patient's life history.

It's also such a relief for new parents of children with Ichthyosis - knowing they are supported and understood even when the condition is so rare.

Tell me about your experiences with a GP. Do they know about your rare condition? Do you spend a lot of time educating them? Have they suggested new treatments and provided additional support that your specialist hasn't?

17 October 2015

See those two beautiful ladies either side of me? They're Rebecca and Camille. They're transplant recipients. Generous organ donors gave them new life. Bec had a double lung transplant in September 2012 and Cam had the same in February 2013.

Through the help of the Heart and Lung Transplant Trust (Victoria) Inc (HLTTV), they're able to life a good life - connecting with other transplant recipients, and having access to education and rehabilitation resources. Bec and Cam - and other recipients and families - are members of the HLTTV, ensuring the Trust continues to provide care for future transplant patients and their families.

Here I am with Bec, Cam and Belinda - Belinda's husband had a heart transplant earlier this year and is doing very well.

The HLTTV donated exercise equipment for the Alfred Hosptal rehabilitation gym, refurbished the transplant patient clinic and established a quiet room for patient families. What an awesome cause!

This cause is important to me because it's meant my best friend Cam is alive (and will be my bridesmaid!) and through her I've met Bec and Belinda! Next year, Bec will take part in the Tour De Transplant - a five day, 600 km cycling challenge run by the HLTTV, and Cam regularly takes part in semi marathons. They're tireless campaigners for the Trust - holding regular fundraising events and promoting the cause on social media. Their energy is amazing - and they can do these things because of their transplants.

When I first met Cam, she needed an oxygen tank to breathe. Now she's the busiest woman I know - shopping, exercising, travelling, puppy raising, working, crafting and volunteering for charities - plus bridesmaid duties!

When Bec and I met properly, we shared a dessert - an amazing peach and white chocolate pizza. Look at our faces!

But then I found myself without a car, with little time, the endorphins I got through pushing the pain barrier replaced by endorphins of love. Then I went overseas. And I ate. I came back and I ate some more.

I fell deeper in love, content to sit on the couch. I've written more - that never takes place on a treadmill - always in bed!

I got really sore. Last year was one of the sorest of my life.

Since early 2014, I've been to the gym more times to use the shower when mine was broken than to use the equipment. And that shower made my feet sore - I picked up some nasty from the communal recess.

So many excuses (and legitimate reasons) not to move. My metabolism has changed since hitting 30.

And lately, I've felt fat.

I look in the mirror, unhappy with my body, not feeling I'm the right size for me. I've never had this issue until now. I've always been ok with my size and shape.

My skin hurts as it presses against bulging fastenings. My arms wobble and my tummy is far from the toned pride I had in my early 20s.

Fat hasn't been a way I've ever described myself. And I know worth is not determined by dress size or body shape. So with feeling fat, I feel guilty, because I am aware I have thin privilege.

Most sadly, I've been looking at other women and comparing myself - thinking I'm not as slim/toned/gorgeous as them. Which is completely stupid of me because that's not what I'm about. I'm about loving my body and appearance and encouraging others to do the same. I guess I have the same vanity as everyone else.

I've never compared my appearance or been concerned about my size because I thought that was trivial when I had health issues to manage. Plus, I feel comfortable with unconventional beauty. And I feel it's an expectation I am happy with myself, considering I label myself an appearance activist. But now I catch sight of a tummy roll in photos and I want that conventional ideal. Again, the guilt nibbles.

As the reality of fitting into a wedding dress has drawn closer (less than six months!), I know I've got work to do.

All of this negative self talk aside, it's for my own comfort that I need to tone up.

So I've been gently easing back into exercise and eating better. Not back at the gym yet, but once I settle back into my new job and manage my time better, I'll go. I will. I want to feel that rush again, to kick those goals of running through songs and for my skin to glow. I want to have more energy for life. Because burning energy gives me more energy.

This last month I've been on long walks, short runs in my neighbourhood, done lunges and squats in the park and skipped like it was 1989 when I did jump rope for heart. In my previous job, I walked to and from work each day. And I've done incidental exercise, walking to get groceries instead of driving there.

I feel better. Happier about my body, even.

Not liking my body is out of character. I want to look in the mirror and see what my body can do, see tauter skin, and see what Adam loves about it.

I've stocked up on cute active wear - it makes me want to move. Proof looking good can make us feel better about ourselves.

I took a cheeky selfie in my active wear recently, and liked what I saw. My skin was clear and my body felt good - more toned and on the verge of a glow. It's a start.

12 October 2015

It has taken me so long to write this post. Almost two years of processing my feelings and drafting my words. Because the impacts of going viral are both temporary and long lasting.

I want as many people as possible to see my posts. But I would never want to go viral again. Because going viral was not something I was prepared for. And it’s taken a long time to write about, because it affected me more than I imagined.

Going viral is perhaps a goal for bloggers. Most months I see posts in blogging Facebook groups asking how to go viral. I see bloggers actively chasing virality - aiming to be published on viral sites. And I cringe.

Bloggers talk about their Pinterest or blog posts going viral, and I wonder what they define as viral? How many hits? How much of their confidence was shattered? They ask for advice - and others say you can't control virality, it just happens. I offer advice in an attempt to dissuade their wish. You've got to have thick skin to go viral.

I went viral in December 2013. One part of it I had no control over because someone had posted a photo of me on Reddit. And then when I took on the bullies, and wrote about it, my story went public and lots of news outlets wrote about it. I've written and spoken about it a lot, so I won't rehash what happened today. You can go back and read and listen about it via those links.

Done? Read on!

The dark side:

It seems every week there is a new viral sensation online - and most times, the subject is not intending to catapult to fame. As I've experienced, going viral seems to be both a positively surprising and difficult time - a rollercoaster of instant fame and accolades as well as sheer vitriol from keyboard warriors.

The New York Times reported on the sinister side of viral fame, detailing the way 16 year old Alex Lee's life changed in November 2014 when he became #AlexFromTarget. A teenage girl took uploaded of Alex to Tumblr - a photo that was sneakily taken the previous week, with the caption "Yoooooo" and soon his photo went viral - the hashtag was born. While teenage girls threw themselves at him (Alex told the NYT: "I’ve been in the house the entire time," he said. "I’m kind of scared to go in public."), he also received death threats and was called obscene names - his parents feared for his safety.

Alex gained over 500,000 Twitter followers in one day (more than the population of his home town Frisco) - and almost a year on, a mundane tweet stating he's hungry was shared 695 times.

Going viral can also happen when someone rattles a community - like a blogger taking on the Thermomix lovers. My blogging colleague Melissa Hugzilla describes the experience of going viral "exhausting and exhilarating and surreal and stressful". She wrote about the Thermomix - asking if it was viral, a cult or a pyramid scheme? - and dissected the experience here and here.

The blog post went viral and was then republished by Mamamia. The views and shares escalated quickly - and she endured callous comments from strangers, especially Thermie fans. In her posts about going viral, she said - a number of times - she found it hard to believe whether it was all even real, consumed by checking stats and screen-shotting them for prosperity. I love how she hasn't taken herself too seriously - in describing the impact of emotional exhaustion, she writes: "And then, the final crash. I curl up in the foetal position on the lounge and fall asleep at 7pm. I am so thoroughly over myself.The post isn’t even that good...I also discovered that I really do prefer obscurity. I don’t know how Kim Kardashian does it."

Here's what it felt like to go viral:

Going viral felt out of control.

While it was exciting to see the blog stats climb (80,000 hits in two days) - and like Melissa, I was constantly checking and screen-shotting them, it wasn’t exciting to wake up to awful comments. Some of the commenters told me that I should be dead. People said whatever they liked because they're not my supporters.

I couldn't control who saw my blog or commented on it or reproduced my story and photos. I couldn't unsee the hate speech and death threats - only passing on the job of comment moderator to Adam - and it wasn't so easy for him to read them either.

New (or voyeuristic) readers had no context about my life and previous writing because they mostly only saw one thing I’d written.

While I do my best to keep aspects of my life private from my blog and social media, those who know me are excited to see me on a website they read and say "she works with me" or "she comes into my shop all the time", and so they reveal more of me than I intend to. This happened a lot after Reddit. My workplace and home suburb was revealed.

Lots of people sent me friend requests and messages in Facebook - some sent me offers for 'cures'.

People who saw how distressed I was told me to switch off the computer. They aren’t digital natives and don’t use the internet as much as me, and they just didn’t understand how it wasn’t easy not to switch off.

The misuse of my photo on Reddit didn’t happen just once. It happened twice more, in murkier depths of Reddit, between Christmas and New Year. In hindsight, it was probably worse than the first time – because the comments became threatening. I was scared for my safety. When you are threatened in the street, you know to call the police. But who do you call when you’re threatened online?

When I commented on the threads, demanding for my photo to be taken down, I was just mocked even further. One moderator told me that Reddit doesn’t own the place the picture was posted to, and so I’d have to contact Imgur. I privately messaged the moderators – and I realised one thing.

Trolling is fueled by a pack mentality. The same moderators who were condoning this stuff on the public forum were apologetic to me in private messages. They felt some sort of compassion I guess, and the photos, comments and then threads were removed. When I tried to raise attention to this, it went unnoticed. People were on holidays, the time I took on Reddit was a week before (and that’s a long time on the internet).

I still get a huge amount of traffic from that post on Reddit, and from some of the stories written about it. Stories about my Reddit experience pop up occasionally - mid 2015 there was a spurt of international coverage, 18 months after the event. Today, the initial post I wrote about Reddit has over 99,000 views - the most viewed of my blog.

It's the story that keeps on giving.

Bullying is a pack mentality, but so is kindness. The amount of support shown soon overtook the amount of negative comments. People killed those trolls comments with kindness. Minds were opened, the Redditors told me so. The media attention and most of the comments was overwhelmingly positive. I've got long term readers since Reddit. And I have been stronger and bolder than ever, writing much more focused content. Because I now know my positive influence.

I want my work to reach as many as possible - I want to influence the way people think about appearance diversity and disability. I want to continue writing and hopefully release a book. Being an online writer And having a social media profile can help me achieve these goals.

But I want my work and writing to reach the right people. Going viral is not the right way to make this happen. Longevity is not 15 minutes of Internet fame.

Internet fame doesn’t last long. For about a week I was that red woman who took on Reddit trolls. And for the rest of the year I was that woman that they’d maybe seen somewhere before…

My advice:

Ask yourself why you want to go viral? Fame? A measure of success? Can you handle the implications? Can you continue to maintain your profile?

Know that most people who visit your blog (or YouTube or social media platform) at the height of you going viral (when you're at your most contagious?) don't know you. They don't know what you're about and are only judging you from the 500 words you'd written then. They probably won't stick around - but if the nice people do stick around, that's great!

Remember whatever you write online is in the public domain. Your stories and photos are fair game for journalists. You might feature in media outlets you don't read or like. Try to negotiate fees to tell your story on your own terms if this happens.

Going viral does get you noticed. It wasn't all bad for me - I've achieved a lot since. But the attention will fade, and you'll have to continue to work hard to get noticed further.

Seek help:

If going viral happens to you, make sure you've got someone to talk to - someone who understands the online world. Make sure you're not alone through the experience.

10 October 2015

Yesterday I found myself the subject of nastiness on a snark site. It's happened to me a few times, but these words have been the most biting, making me question myself, even though I know none of it is true! Reading this stuff punches you in the guts. It makes you question yourself - your writing, your intent, your worth. It makes you censor yourself a little. And even though the discussion about me was only a few paragraphs, I've sadly focused on that over all of the good things people have said. I'm not perfect, and I know I'm outspoken and assertive at times - I've had to be. There are writing styles, behaviours and opinions I am not a fan of too.

The thing is, when someone criticises 'your work' and justifies it that they weren't criticising you, they're wrong. Because work that is about you (and other issues), that you spend a lot of time on and that you're proud of is YOU.

This snark/trolling behaviour is often kept quiet - but it happens to many of us frequently. Recently, a few bloggers I know have written about their experiences. People behind these anonymous profiles often have no idea about what else is going on in a blogger's life, or how their words will impact them. And they believe their criticism will help the blogger improve.

I challenge you to tell someone how awesome they are - so that's what they'll remember about today. Spreading love feels much better than spreading hate.

Perhaps I shouldn't give the snarker more airtime, but it made me feel better to write a response, and use my own space to address them.

This is what someone wrote about me:

"Surprised to read the praise of Carly in this thread. I think she's one of the most narcissistic writers I've ever come across. She has no time for any opinion but her own and is as judgemental as all get out. Perhaps she gets a disability pass? I don't get it. Her writing isn't any good and all she does is self promote – she clearly sees a career path in being a OMG special snowflake public speaker for disability rights. Except she's lacking the intellectual rigour of someone like Stella Young and she's as boring as batshit.

Nope. everything she does is for self promotion. She's into anything that gets her head up there as the poster girl. Including that meet up – if you go back through her blog there are online support groups and camps that she attended for years. This was an exercise in "I'm awesome look at meeeeeeee"

She doesn't take sponsorship, but she takes paid speaking gigs and that's her endgame. TV exposure, writing for DiVine and the public displays. They are calculated and I wouldn't mind that if she wrote at a level beyond that of a sixth grader or articulated an intelligent intellectual debate around disability in this country (ie: Stella Young). But she doesn't – it's all Carly, all the time.

Happy to politely disagree, but IMHO she's one of the most self serving bloggers out there and she uses her disability and the disability community to self promote and boost her profile; which I think is just as disgusting as using "Red Balloons for Ryan" or pimping out your kids."

And here's my response to them:

My blog has indeed boosted my profile. Sometimes I pinch myself, wondering is this really my life. It was always my goal to get into the media as a news journalist or documentary producer - I never intended or expected to be telling own my story in the media. I'm glad I have though, because it's done wonders for my once fragile self esteem, given me amazing opportunities and has helped others with Ichthyosis, other facial differences and disabilities feel less alone. I've made many close friends and learnt so much about disability. And it's nice to receive a little play money from my writing and speaking - it helps to save for the wedding and holidays. Click away if you hate it so much.

The Ichthyosis meet was certainly not all about me - 75 attended and 25 of those were affected by the condition. I did the bulk of the organising though. I can't speak for the attendees, but for me, the meet was long overdue, and has put me in touch with wonderful people around Australia. I only attended one support group's camps, and for those I was an adult mentor. Of course I wasn't able to post pics or details of the members on my blog - that would have breached privacy. I link to online support groups - not all that I'm involved in - so others with Ichthyosis can access them.

I used to be on community TV (unpaid), very few watched the show. Glad you watched though! I do a few paid speaking gigs a year but I can't quit my day job to survive on speaking gigs! I haven't written for DiVine for years - and the editorial guidelines meant writing was simplified significantly - which might explain me supposedly writing like a sixth grader. I write for other publications now - you might have seen my byline on Fairfax news sites. My writing style is generally simple though.

You mentioned Stella Young a couple of times - she was a friend of mine and I admire and reference her work a lot. She's one of the smartest people I know, and taught me so much about disability politics and pride. I could never compete or compare myself with her.

I'd love to explore Australian disability policy in my writing (for example, funding, the NDIS, abuse in care) but working as a public servant prevents me. I also don't have the time - working full time, boosting my ridiculously inflated profile and planning a wedding, plus managing my condition means I can't write it all. I do write a lot about disability media and the issues around exploitation of people with disabilities. I even wrote about disability poster children - interviewing people who have been involved in disability charity advertising, funny you should mention it.

Being seen as narcissistic is always something I'm concerned about (and hope to avoid), and I hope to always share others' opinions where I can. But my blog is mostly my story. I expect since you last read my blog, you haven't seen that it's moved from a personal diary to more op-ed pieces - and most of these feature more than just my opinion in them. On the front page of my blog at the moment, there are three posts that are not "all Carly, all the time" - including a guest post. There are also many links to other bloggers and opinions throughout. In May I give up my blog for others to guest post - last May there were 46 posts from people other than me. I paid others to edit them, even. And even if it was all of me - that's what a personal blog affords. Bloggers can make a blog all about them, or not. And I'm sure you'll agree, it's better someone with a disability writing or speaking about disability issues (and being paid to) than someone without. Happy to be just one of many people in the disability community doing this. Why do you think people with disabilities telling their stories is disgusting? Is it because you're uncomfortable seeing us in a public arena, being paid for our lived experiences?

I'd love to see your writing on disability debate - do something productive with your time instead of whinging about me. Since when was politeness tearing down someone you don't (or do?) know on a snark site? A special snowflake is the last thing I want to be. I hope you're only referring to the way my skin falls when I get undressed - just like snowflakes.

I'm going to enjoy this day - make it all about Carly. Because it's been a shit week, even without your words, and I deserve it.

08 October 2015

Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference. The blog post was received really well - with friends noting down the questions for the next time they're asked to appear in the media. You can read that here.

For my own amusement, I put my own advice to the test when I received yet another invite to take part in a documentary about rare medical conditions. I think the producer just expected me to say yes, of course I'll be exploited by a voyeuristic program.

I emailed the producer the questions I stated in my post. I was frank with her - explaining my concerns about how they portray disability. I wonder if she's ever had such rigorous, assertive questioning before?

The producer surprisingly emailed me back, addressing my concerns. She did so empathetically and comprehensively, I admit. She reassured me they will not have exclusive rights to my story, and they will not use the disempowering language like "suffers from".

But the show fails. Epically.

It's called Body Bizarre. The sensational title is a drawcard. The producer said "I must stress that the name does not reflect the sensitive nature of the programme. The title is more of an "attention grabber" and not indicative of the human nature of the stories we cover." The fact different appearances and sensational titles attracts viewers is mawkish. The title is abhorrent. It's not sensitive nor empathetic. Just like I don't want to be labeled embarrassing, I don't want my condition to be labeled as bizarre either.

The production company will offer me "a $200 inconvenience fee". What. A. Joke. I know my worth. And I suspect the company is making a hell of a lot more money than to scrimp on compensating their subjects.

The producer provided a link to one of the episodes, detailing a friend with harlequin Ichthyosis. The narrator uses phrases including "suffers from" and "normal skin" - very othering, pitying language. In the first minute and a half, the camera zoomed in on my friend washing her face, creaming her body and cutting thick skin off her feet . And I ask myself, why is it ok to broadcast these private bathroom moments in the name of medical information? I didn't watch any further.

I know some readers will think my stance on this exploitative media is an absolute contradiction. People have told me so. Pfft. I blog, regularly write for the media and quite enjoy having an audience. I am comfortable sharing my image across social media. I put myself out there. So I get it. Why wouldn't I want extra media attention? Why would I criticise this method of "awareness raising" when I do it via the media too? Aren't I hypocritical?!

Well. I like to be able to tell my own story in my own words. I like to portray the condition realistically and positively (even the difficult things) - with positive language. I don't want to be in the public gaze for voyeuristic entertainment. I don't want to be someone else's money maker (for a $200 inconvenience fee). I don't want to be the subject of pity or inspiration, and I certainly don't want to endure the ridicule from viewers.

I want to tell my story on my terms, changing the disability media landscape. And I encourage others to do the same.

The public gaze has moved from the human spectacle of The Lifestyle Channel to our social media feeds now - with smartphones allowing for social media paparazzi. This new wave of paparazzi are creating inspiration porn for likes and shares. Karin Hitselberger who blogs at Claiming Criprecently wrote:

"Disabled people are not tourist attractions, science exhibits or zoo animals. You cannot photograph us or stare at us because we exist in public spaces...

I thought of the difficult situation of being disabled in public in the modern world.

People have always stared, but now staring has gone viral."

And it's programs like Body Bizarre that encourage this social media paparazzi. People think it's ok to stare and capture their curiosity through their smart phones. The focus on people with disabilities doing every day things, existing to inspire and remind viewers their lives aren't so bad after all perpetuates the need to photograph someone with a disability doing something ordinary in public, upload and inspire.

During our Quippings - Disability Unleashed shows at the Melbourne Fringe Festival, we formed a conga line - inviting stares and staring back. While our audience is progressive and assumably not the type to stare at people with disabilities, it felt good to pretend I was turning around the staring I receive regularly. During the last show, when I felt my most relaxed and uninhibited, I pointed at someone and let out a cackling laugh. It was for all those who've done it to me. It felt so good.

Kath Duncan, co-producer of this year’s Quippings Fringe shows believes the uniqueness and power of our performance is because "we, the diverse and disabled performers, are in control of the space." Kath said:

"Quippings was born because the opportunities for Deaf and disabled people to present our stories our way were limited. We formed to produce, write, direct and present edgy and intimate stories, working our own bodies as creative disability pride in action. Defying how others see us. We are over-examined and over-written with weird or negative assumptions pretty much every day so this year we fully embraced that tension of seeing and being seen by circling the audience every night as performers and disabled people, staring at them and inviting them to look at us. It was very powerful and a real ice-breaker for us and for the audience, examining them like we so often experience, while showing them it was ok to look at us just as we are, without mediation by some non-disabled commentator or editor."

The Conversation wrote of disabled performers at the 2015 Melbourne Fringe Festival - asking "where did all these artists with disability come from, and why are they suddenly visible?" The article describes the move from performances where "the disabled are the passive subjects of the "able" gaze, within forms of performance designed by and for "able" artists" to "disempowered or marginalised communities... progressively claim[ing] the right not just to be visible in the cultural landscape, but to tell their own stories."

Body Bizarre has created passive subjects as objects for public scrutiny, whose stories are narrated to evoke pity - a concept The Conversarion described. But through people telling our own stories through blogging and performances and YouTube channels and standup (sitdown?) comedy and podcasts and mainstream media is taking back that power - inviting the public gaze in a much less gawkish way.

When we invite the public gaze in on our own terms, it's very empowering. We are choosing how we want to be portrayed - taking on the tabloid and social media paparazzi predators.

05 October 2015

I recently wrote about my love for Instagram - sharing advice from Jadah Sellner and showcasing my favourite accounts. I mentioned how much I love using Instagram to connect with others who have Ichthyosis.

Instagram is an unlikely platform for forming a strong chronic illness community. I have 'met' lots of amazing people on Insta - even creating some great writing relationships (it's how I got to write the post for Jordy Lucas).

It's a great way to build a support network - so lovely to read comments when you're feeling down, and also to connect with others who understand what it's like to have a chronic illness or disability.

Danielle tells me:

"I use Instagram as part of my support system. It surprised me, but there is a great chronic illness community on Instagram. I've "met" some wonderfully encouraging people."

And Michelle, who has been doing awesome fashion posts to show she's gotten dressed despite being so sick, said:

"Mine's a bit of a mix of my life, but the reality is chronic illness tends to make an appearance in some manner as it's with me 24/7. In some ways mine is a tangible reminder to me that I am living a good life, especially on the days when it is all too much."

Here are eight ways to use Instagram to build a strong chronic illness community, plus more bloggers with chronic illnesses for you to follow.

Use Hashtags to find others in your community

I use hashtags to increase the searchability of my Instagram posts. (Hashtags are grouping tools - I wrote about them here.)

I always insert them in the comment below the post - I think too many hashtags clutter photo. I try to use relevant hashtags - occasionally using viral type ones (#quoteoftheday, #whatiwore #throwbackthursday).

Iconosquare has a great tool to see if the hashtags you're using are performing well, and suggests others you could use. (The Iconosquare optimisation tab (link above) also tells you which filters perform the best and when your audience is online)

I obviously use #Ichthyosis and this lets others with (or interested in) the condition find me. I regularly search this hashtag to find others affected too.

Recently I met a lovely lady from New York - also a blogger - who commented on my photo, saying she has Ichthyosis too.

We got chatting via email - it's been great! You can find her @AudreyAllure.

I've met lots of parents who post pics of their cute kids affected by the condition too.

Use illness hashtags on your photos and search for them on Instagram - see who you can connect with!

Reply to comments.

I'm not so great at replying to blog comments (sorry and thank you!) but I'm better at replying to Insta comments. I usually do this on public transport, replying to all new ones in one go. It's a great way to get a conversation happening and show you value your community. Last week I did a really silly post about what I was wearing (in my living room) to the AFL Brownlow medal, and I asked my followers what they were wearing. I posed in my pyjamas. The comments were great! Such a fun way to pass a Monday night.

When you build these relationships, it increases your credibility, and people will want to engage and get to know you. They might even visit your blog!

Do a photo challenge.

Ellyn, who blogs at I Need More Spoons, has dysautonomia. Her Instagram profile says the platform started out as a photo diary, but now she raises awareness of the condition.

October is Dysautonomia Awareness Month and she's created a photo a day challenge. So cool. She's asked others to take part, using #DysautonomiaPhotoChallenge. Each day has a different prompt.

If you start a photo challenge, you might want to collate the participants' photos into a collage at the end of the day/week/month and share it on Instagram, tagging the participants and thanking them. This will make them feel so special. (Use Diptic or Canva to create a collage.) Ellyn captured the faces from day one of her challenge in a collage.

You can link to your latest blog post in your profile by editing your profile each time you do a new post.

I can't say instagram creates a lot of traffic to my blog, but I do have the occasional follower who clicks out of Instagram to read my blog and returns to Instagram to leave a comment. Hi @Lenkaland!

Share a story.

I mentioned above that Instagram doesn't drive much traffic to my blog. That's ok - I've got my blog for long form posts. What it is good for is to share bite sized snippets of my life - food, fashion, flowers and sunsets, mostly. Because Ichthyosis is such a visual condition, and because I like to be in control of how my appearance and condition is portrayed, I like to share photos of myself and blurbs from my blog. People who don't follow my blog can get an insight into what life with Ichthyosis is like, and often, a lively discussion ensues. During Ichthyosis Awareness Month I shared a few posts about the intricacies of my condition - fingerprints, the need to wear a hat for warmth and a trip to the hospital. Followers seemed to find these posts interesting and informative.

The post fared well! Obviously there was written context. It is a proud thing for me because this treatment is a long time coming, and vein access is a skill. Most people are impressed, or welcome me to the "factor club" if they infuse too!"

"I think I probably use it mostly for escape, or release. I might see something that strikes a chord for some reason, it might emphasise the beauty that lies hidden all around us in very mundane things, or it might be a visual metaphor for how I'm feeling. I don't use Instagram a lot, and do use it for random things too, but that's the main thing. Probably. I travel a lot on trains, which can be hard when I'm not well, so I muse as a #reluctantcommuter... It keeps me company! :-)"

Take part in hashtag parties (or start one of your own).

Jadah Sellner called hashtag trends "hashtag parties". It's not literally a party, but it can be fun. It's joining a hashtag trend that someone else has created.

"After a mother of a child with albinism contacted Ross to see if he could offer any guidance for her young daughter, the model wanted to go beyond by helping others suffering from bullying and discrimination. And so he started a movement."

Of course, I loved this initiative and I jumped into this hashtag party, sharing my photo and a little story, and used relevant hashtags (below the photo).

My caption for the photo was:

I love the work of appearance activist and model @shaundross - he's started the movement #InMySkinIWin. Shaun says: "Beauty is you and what you make from your confidence in your own perfectly imperfect body. Together, if we encourage others to love what they see when they look at themselves, we can win in our skin." And here's me, winning in my skin. This picture was taken by Rick Guidotti from @positiveexposure last year - another appearance activist who captures the beauty in people with genetic medical conditions. When people tell me they wish there was a cure for Ichthyosis, or that I'm pretty, despite, or that they couldn't handle looking like me, I realise my strength. I shrug off the way the media portrays perfection. We win in our skin when we are comfortable enough to reject those standard beauty norms and celebrate our differences. We win in our skin when we tell people we are happy with our appearances and don't need to be fixed. ❤️

I guess I've started my own hashtag trend - #appearancediversity - I don't see many others using it though! Get on board :)

There are lots more photo challenges you can join in on - and they don't have to relate to your illness - but can raise awareness of it all the same. I love doing #EveryDayStyle - I wrote about my reasons here.

I really like the #hospitalchic hashtag party - showing off style in hospital.

Do a fundraiser for your illness community.

Camille from CurlyPops is the queen of Instagram fundraising - raising funds for The Heart and Lung Transplant Trust of Victoria and raising awareness of organ donation.

She always links to her fundraisers in her profile (see above tip!) and she shares fundraising tallies and photos of the events - showing great transparency. She also shows the importance of blood donation by taking photos of intragram infusions at hospital. Find her @curlypops.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.